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Life with Autism

You are not alone! Designed to be a forum for sharing experiences and gaining understanding of others trials and successes, we hope this page will strengthen you and help you through tough times…and even make you laugh. Get a cold drink, pull up a chair, and click around for a while. Because really, we are only as strong as our Diet Coke, our hairspray or Old Spice, and our friends.

Living with autism can be very challenging and yet very rewarding. Families and individuals react differently to the same situations, but they can all provide us with insight. We want you to send us YOUR story! Visit A Day In The Life for more details.  Families Living with Autism ~ http://www.utahparentcenter.org/training/videos/families-living-with-autism/

My Son, Carson: By Cheryl Smith

My son, Carson, has autism. Autism never sleeps, it doesn’t take a day off, or a vacation, it’s always there waiting for him, and me.

Some times it feels forever heavy, like I am being pressed down into a dark hole, my spirit shattered into tiny pieces. I know I can get out, just not today. I wonder how he feels.

I never knew so much worry and pressure to make it ok, to help him, to pay for it, to be happy, to be the mom to all, and the wife, all while teaching him to look at me, to put on his socks, to eat with a fork, to flush the toilet. Nothing is how I thought it would be. I am always unsure if I’m doing the right thing.

I also didn’t know there could be so much joy to know him, to hear him say “mom”, to hear him sing with the Sleeping Beauty video as if it were the concert of a lifetime, to see his sunshine smile, and to get that reciprocal hug and feel, if only for a fleeting moment, his love for me.

I can taste the salt on my face while laughing through my tears when I hear him shout, “To infinity and beyond!” I wish I could go inside his head for even a bit to see what’s going on in there. But then I realize that I would still be an outsider. He gets it, I don’t, so I continue to try and pull him into my world, while I’m sure he wonders what’s wrong with his.

This boy, Carson, my son, my hero, has a life that’s a rough and bumpy road, with lots of winding country turns, potholes, washboards, and natural disasters to navigate. But along this road are butterflies, wild field flowers, glassy lakes and many wonderful things to see and do along the way. He takes me to unexpected places, powerful and amazing. I have to remind myself that it’s not the destination, but rather the journey.

We can’t take the sands of life and sift out the parts we don’t want, the hard and sharp stones that hurt us, but we can use these stones, the ones we would have done anything to avoid, to learn, to love, and to smooth us into a better person.

Carson is my sunshine, my Diet Coke with lemon, my soft blanket, my homemade bread on a snowy, winter day. My heart gets big when I think of him.

The Play ProjectHow Autism was Explained to Me: By Joy Mano, P.L.A.Y. Project Home Consultant

The first time I remember learning about Autism was when I was working at a summer camp for people with disabilities in Salt Lake City, Utah.  We were preparing for a week when several of the kids coming had autism.  They had someone come in to talk to us counselors about autism.  At this point in my life, I had already been working with people with various developmental disabilities, but none of the people I had worked with had autism.

I don’t remember the name of the lady who came to talk to us, but I remember one of her explanations of autism.  This was back in 2004.

It went something like this:

Imagine you are in a foreign country, maybe Russia or something like that.  You’re going along minding your own business when suddenly all these people start coming towards you.  They’re saying something and they look upset but you don’t understand them. They start raising their voices as if that will help you understand what they’re saying, but you don’t speak their language. They start waving their arms, and you can tell they’re upset, but you still don’t know why.  How are you supposed to fix it when you don’t know what happened?  So, what do you do?  Fight or flight.  You may curl up in a ball, hiding your face from them. You may plug your ears to tune them out.  You may start screaming back at them in your own language.  You may try to run away. You may start doing something to help yourself calm down. We all react in different ways.

You can see how this situation may be a bit frightening, uncomfortable, and intimidating. She went on to explain that this may be how some of these kiddos are feeling. Sometimes they don’t understand our language, or our culture. We may get upset because they did something that according to us was not right, but they may not understand why  And sometimes even when we are explaining it to them, we are not speaking the same language and they still don’t understand. When they become overwhelmed and frightened, they may start doing things like plugging their ears, screaming, running away, rocking, looking away, etc.

When she told us this scenario, my eyes were opened. I felt like this didn’t just apply to autism, but to a lot of situations. It put me in a situation that I could imagine myself in, and it made me have more empathy for all the people I had ever worked with and would work with.  As Temple Grandin said in her presentation the other week, her “fear center” is 3 times as big as is expected in a brain.  Can you imagine how certain situations that may seem “normal” to us can be very frightening for someone with autism?

I don’t know how accurate this little story is, but I’m grateful for it because it changed me early in my career as how to approach various situations and how to have more empathy for those reacting differently than I would to those situations.